A blog about my daughter growing up and facing the joys and challenges of growing up with Down syndrome and Tetralogy of Fallot while enjoying the love of a rough older brother. (Look how purple her feet were before her heart repair.)

Saturday, October 31, 2009

Friday, October 30, 2009

Penelope had her annual cadiologist check up today. I must admit that I am a little bit nervous going in. I know I shouldn't be because Penny is obviously doing really well, but there is always a little part of me that waits for the bad news.

WELL, today we learned that Penny is really close to 30 lbs, and she is 34 inches. We also learned that everything looks good! The insuffiency in the valve was measured at a trivial amount. Her branch pulomanary areteries have grown as they should!!

Here is hoping that her next surgery can wait until she is 7 or 8 years old. YAY!!!!

Thursday, October 29, 2009

Sunday night, June 3, 2007 brought a tough decision. At the advice of Penelope's primary care nurse both Scott and I went home that night to get a good night sleep and spend time with Nathaniel. I can't remember the time, but we were asked to come in early the next day for us to say good bye and good luck to Penny.

Of course, we were running late so Scott and I went running to Penelope's NICU alcove so that we could put kisses all over her little body. We prayed that she would be returned to us. Next we had to pack everything up since she would not be returning to the NICU. The plan was that she would go to the PICU (pediatric intensive care unit) and then from there to a regular floor.

Penelope was 6 days old this morning, but she had never eaten anything. All her nutrition had been i.v. up until this point so I had a ton of those 2 oz cylinders with my breast milk which I needed to pack up and ship out. Eventually, the team was ready to transport her, and Scott and I were packed up and the race began. I say race because it was quite a long trip from the NICU in Hartford Hospital to the facilities at CCMC where she was going to be dropped off. There were no less than four professionals walking with us including her primary nurse. They all wanted to rush because they did not want her to crash while en route to the operating room.

We went down an elevator to the bowels of the hospital and then through a long tunnel that ran under ground, under the roads to the parking garage. There were two sets of steel security doors on the Hartford Hospital side and after what felt like an eternity of walking, anther 2 sets of steel doors on the CCMC side. When the first set had been visible, I thought, great we are almost there, but after we passed through those doors, another long corridor loomed ahead. Finally we got to the end and found another elevator on the CCMC side. We turned a corner and it was here that I had to say good bye to my little baby. She looked so helpless in the isolette that she was transported in.

Our hope was that she was going to be a good candidate for the full repair. This meant that the hole between her atriums and the hole between her ventricles would be stitched up. Also, a donor pulmonary artery would be placed where hers was missing. We were warned that Penelope would look quite swollen after the surgery and that the earliest we may not see her until 4pm if the complete repair was done, but maybe earlier if the a shunt procedure was done.

We waited, and waited. I kind of had this feeling that someone would give us hour by hour plays, but that was not accurate at all. We were assigned a family room where we could sleep as long as our child was assigned a room in the PICU. The regular floors in the hospital allow (and accomodate) rooming in for the parents. However, they have a strict policy against parents sleeping in the PICU. That was fine with us, the family room was one of four bedrooms that shared two bathrooms (with shower facilities) and a kichenette. I thought it was great! We didn't have to run back and forth to home and we only lived 15 mintues away. How great was this anemity to those traveling hundreds of miles!

Finally, after waiting in several different waiting rooms looking for someplace to feel comfortable, we retreated to our room. At last, at 1:15 pm, the Dr. himself knocked on our door. We shared a meeting in the hallway to the rooms, and were told that Penny's coronary arteries were not in a good spot and she was outfitted with a BT shunt. He could tell that we were disappointed for this because this meant we would have to come back in 6 months or so, but he said it was definately the best for her. He went on to admit, some doctors are more agressive and perhaps Boston would have done the full repair to avoid having another invasive surgery, but he liked to err on the side of caution to avoid damaging a vitail coronary artery and so he stuck with the shunt. We thanked him for his compassion and his hard work. We knew she had been in good hands!!

After what felt like another eternity, the closing team finished up with Penny, and we were allowed to meet her in the PICU room. I can honestly say about this experience that I walked right in, and then I walked right out. That baby in the bed was not mine. But the name on board clearly placed baby Ringrose to that room. Penelope's ICU nurse came in to explain all of the pumps and the breathing tube (in case we didn't already know about it) as well as the foley catheter, and the chest tubes. She told us that Penny was retaining fluid after the surgery which was more than common and that our baby was being administered lasix to help her heart in getting the fluid off of her. It was scary to go in there an sit by her bedside. I couldn't even imagine having to go through that myself and here was this little girl hooked up in so many places.

Wednesday, October 28, 2009

Anybody that knows how to interpret dreams, your comments are welcome.

A large convention type hall was used for a meeting of people with Down syndrome and their families. I haven't yet been to a CDSC convention or a Natainal convention so I am not sure what they are like, but I have a pretty good idea. I was alone with Penny, because in my dream Scott stayed home with Nathaniel. I had been having a great time getting to know other families and other children and some adults with Down syndrome too. This dream felt so real, like I really knew these people.

At some point, it was like there was a lock down. We were all trapped in this hotel that housed only the convention people. Armed guards could be seen through windows at pretty much every locked exit. Obama was visible through a large glass, sitting behind his presidential desk with body guards standing on either side of him. Suddenly, his voice came on a speaker and he announced that we were all to be terminated since our children's lives were not ended before they were born. I don't remember the exact words in the dream, only that the method of execution for us was that gas would be piped into our convention space.

I cried so much in this dream. We all protested and demanded to know why our children's lives were not valued. Additionally, many of us had family left at home and we insisted that this was good reason to let us all live. Obama was unwaivering in his intent.

Luckily, it was a huge space that we were confined to, so in my dream, the gassing took an infinitely long time to produce any effects. I noticed a police officer (dressed unlike the guards) in a window and I held up a sign and waved my arms to get her attention. I communicated to her that Obama was in this building with us and he intended to murder us all. This officer was able to confront Obama and call off the mass murder. But he gave me a terrible look and let me know that this was not over, especially with me.

So, word number five in Penelope's vocabulary? Is it Mamma? Madre? Mum? or Mother? NO. How about the word, "butt!"

. . .

. . .

. . .I have to admit I am kind of to blame on this one. But when your 2 1/2 year old is running around the house happily smacking herself on the bottom yelling, "Butt, butt, butt, . . . butt. . . butt, butt. . . butt!" it is a wee bit difficult to hold back the smiles.

Monday, October 26, 2009

The Thursday afternoon, I sat there nodding my head at all the things Katie had to tell me. Katie was the physician's assistant to the pediatric cardiac surgeon. Anyone who has met Katie will agree with me here that she is phenomenol.

She mapped out what was wrong with Penelope's heart and explained the diagnosis of Tetralogy of Fallot with pulmonary atresia. I was told that Penny would need a surgery immediately, but that the sugeon, Dr. Mello, was scheduled on important cases throughout the week at other area hospitals. There were two scenarios of what would occur during surgery. The preferred outcome was a complete repair. This is where the doctor would cut inside the heart, fix both the holes between the atriums and ventricles. Also, a donor artery would be used to replace the missing vessel. This was only a possibility because when working with a heart so small, the coronary arteries can cover a lot of the surface area of the heart, making it difficult to find a safe place to cut into the heart. If the coronary arteries were too much in the way, Dr. Mello was going to insert a BT shunt between her pulmonary artery and aorta (kind of like a synthetic ductus). The shunt would allow Penny to stay oxygenated so that she could grow and develop, but also her heart would grow bigger, possibly allowing the space to perform a complete repair later.

So, the advice was that we were to play the waiting game. We prayed that Penny would be kept stable enough to wait until the scheduled surgery on Monday.

Later on Thursday, I met with Penny's primary nurse, Rhonda. I loved her way of letting me keep as much control as possible since I was the parent. She also insisted that I get to hold my child so that Miss Penelope could understand that her mother was there for her. I have to say that day I got to hold my newborn for the first time since she was taken away from me in Manchester, it was wonderous. I got to smell her, feel her soft skin, kiss her warm head, and wisper all my love to her. As saddened as I was still of the diagnosis of Down syndrome, and then the news of the heart defect, I felt all the tension float away as I got to settle in with Penny in the chair.

THANK YOU FOR THAT RHONDA

The next couple of days were a blur of the NICU, coming home to find all the flowers and cards people were sending, pumping, and napping. Scott or I were always are the hospital. There was never even a discussion about this. We could never have let our daughter be alone even for a few minutes. So, we took turns staying home with Nathaniel and making sure that his needs were met. My mother also watched him a lot.

It should be noted as well, that at this time, Scott's 59 year old mother, Sandy, had been recently admitted to the same hospital to be treated for some respitory concerns. She would get into a wheelchair and get her husband to take her down a few floors to come into the NICU and visit. It was tough to see her so sick, but I loved that we could not keep her away from her new granddaughter.

By Saturday, it was clear Penelope had a very difficult time keeping her little body going. The balance to keep her respitory and blood pressure rates where they wanted it against the ever important blood oxygen saturation level (or pulse-ox) was difficult. I got a call from Scott in the middle of the Saturday night that they were going to intubate her. He came home to switch shifts with me and we both wanted to go to the hospital to see her. After we left Nathaniel with my mother again, we headed off.

Seeing Penny with the breathing tube was very traumatic for Scott, it reminded him of his ailing mother and I remember how moved I was by his tears. For me, it was honestly just one more thing. She was going to have surgery the next day and she would have been intubateted so I saw this as one less thing to worry about tomorrow! But it was still touch and go and Penny was a very sick baby. My grandmother called her nephew, the deacon and asked him to meet us at the hospital to baptize her. Scott and I were so happy for this because we didn't want to take any chances.

Saturday, October 24, 2009

So today, Penny was a really "bad baby." She bit Nathaniel on the cheek. Really badly. I put her in the time out corner. This was the second time I ever put her in time out. It took her awhile to stay there, but finally she got the point.

After two minutes of continuous sitting, I let her get up and led her back to her brother. I pointed to his cheek and told her that what she did hurt him and I asked her to say sorry. Boy did she cry!!! Was she said that she hurt her brother. I don't think so since I don't believe children at that age can feel empathy. But maybe a person with Down syndrome are more advanced in that area? Who am I to judge? I think it more likely that she was upset by my tone and that she was put in time out.

Thursday, October 22, 2009

Please click here if you would like to see Dr. Dennis McGuire's rendition from an address at a 2005 National Association for Down Syndrome assembly. It discusses ideas from dancing, to hugging, to what movies might be like.

Before you head over there, tell me: What do you think the world would be like if "People with Down syndrome Ruled the World?"

And I am really excited about going to the CDSC's annual convention this year and I just registered today. The guest list includes Emily Perl Kingsly, Jason Andrew Kingsley, Mitchell Levitz, and Dr. McGuire will be there to speak on his essay in person. Yay!!! So this link above is just a sneak peak for me. I know, I am so sneaky!!

Tuesday, October 20, 2009

Fact: 50% of people with Down syndrome are born with a congenital heart defect.You can read where I left off in Part IV here.

I left the hospital and arrived home after 10:00 pm. That was probably the longest day of my life! But. It was not over. I wanted to use the breast pump before I took the sleeping pill and went to bed. I had rented the hospital grade Medela pump from Manchester, but I realized I was not in possesion of all the accessories I thought I had saved from Nathaniel. So, I put the machine away and went to bed, hoping, . . . no praying, that everything was going to turn out ok. I cried myself to sleep.

The next morning my mother picked me up to bring me back to the hospital. (I think Scott went to finish up the loose ends at his job so he could focus on Penelope over the next few weeks.) I didn't want to push myself by driving around God's creation, but physically, I felt great. It was still hard to believe that I just had a baby the day before. First we went to Babies R Us to see about those accesories I needed for the breast pump. They didn't have it, so we treked back to Manchester Hospital. I was able to purchase what I needed and off we went to Hartford Hospital.

After parking and the journey to the NICU I was able to greet my baby quickly before I learned where the private rooms were so that I could express my milk. There were three lactation consultants at the CCMC NICU, and one woman in training, so it was a comfort to get that support. Even the attending said something to the affect that this was the best thing I could physically do for her at this point. Busy work, to stave off the feeling of helplessness. But important work none the less.

I felt like I was waiting around forever to meet Penny's cardiologist. I received word that they wanted to do another echocardiogram to confirm the diagnosis and to make sure that her heart was going to keep working until they could get her in for surgery. This day was Wednesday, but the earliest they could get her in was Monday, June 4, 2007. Of course, when I finally decided to take a quick break to grab something to eat and express milk, the doctor came and went!

The next day, my friend Audrey drove me around. I still wanted to take it easy, since under normal circumstances, I would still be in the hospital. She drove my son and I to his school to drop him off and then headed to the hospital. It was this day that I learned a lot about Penny's anatomy.

The itty bitty ductus arteriosus was being kept open by medication and was keeping my daughter alive! The ductus is not labeled in this picture, but it is the very small vessel between the aorta (AO) and the branch pulmonary arteries (PA). Penelope was born without that ever important pulmonary artery. The ductus that was kept open magically by medication is something that generally closes after birth when the baby starts to use the PA to actually get oxygen from the lungs and not from the mother. I learned that Penelope was diagnosed with Tetralogy of Fallot and Pulmonary Atresia. If she had a stenotic or narrow artery, she might have been allowed to come home for a few months until she got big enough for a proper surgery. These are the many issues that make up the diagnosis. Firstly, she is missing the pulmonary artery, or PA. In addition to the problem with the PA, she also had a hole between the two artiums (atrial septal defect, or ASD). Also, she had the hole between her two ventricles. Since she had no PA this was the only way to get blood to move in a circular path. As seen in the diagram, her aorta sat right above the hole in the ventricular wall (ventricular septal defect or VSD) and it pulled blood from both the right and left ventricles. This is called an overriding aorta. She also had right ventricular hypertrophy because her right ventricle worked extra hard to try to pump blood into a pulmonary artery that did not exist and extra muscle tissue built up on that side.

Monday, October 19, 2009

Scott and I finally left the Manchester Hospital a little after 7pm. Again, all I can tell you was that it was so surreal. I know there are plenty of moms that like to leave the hospital as soon as possible, but I was not one of them. Only 12 hours earlier, my daughter Penelope was delivered.

I needed to see my son again before the night was over as well as pick up the prescription for the sleeping aid so we headed out to my mother's house while the prescription was filled. I hugged and kissed Nathaniel so much that night. I had already begun to project my feelings of loss onto him and wondered how his life was going to be affected by his new sister. After I was satisfied that Nathaniel was settled in for the night, we made a quick stop back at the pharmacy and then off to Hartford we went.

Scott had stayed with Penny for several hours earlier in the day so he already knew where to go and what to expect.

It was close to 9pm when we parked at the garage. It was a warm spring evening when we walked out of the garage and across the courtyard and into Hartford Hospital. CT Children's Medical Center is adjacent to Hartford Hospital so CCMC is able to place their NICU in HH to have that unit close to the maternity ward. We were stopped briefly since visiting hours were over, but were quickly on our way up the elevator.

As we approached the large steel security doors to the NICU, I almost didn't want to go in. We were eventually greeted at the window and given nametags. On the other side of the doors, Scott schooled me on how to scrub in. I remembered back to when my baby brother Joe was born premature. I was ten and I was allowed to see him, but I had to scrub in as well. Scott and I headed to her little alcove there in the North wing of the NICU. About only five beds were permitted on this wing and it was so quiet. All the lights were off and I could hear the soft beeping of the machines. Occasionally, an alarm would ring in the distance. But in Penny's small wing, she was the only really sick one. The nurse on duty greeted us and led us into her little corner.

The first time I looked at her, I actually felt numb. A whole lifetime must have passed since last I held her at 9 am. Her eyes were so incredibly swollen that the edge of her eyelids flipped out a little, especially when she cried or was upset. In fact, the whole top part of her head was red. The corners of her small mouth were downturned and her chin was all scrunched up from the scowl. Her arms and legs were sprawled out. I tried to comfort her, and patted her arm. This immediately got her agitated and her eyes looked even more firery. The nursed warned me that it might not be a good idea to touch her while she was on the medicine to keep her heart working. "It can make you grumpy," is what she said to me.

So much time has passed since her birthday; I can't even recall how many lines were in her. But at minimum, she had an arterial line, two peripheral i.v.'s, a sensor on to continuously monitor her temperature, a pulse oximetry probe, and sensors to measure her respiratory rate. I quickly learned the meaning of the green, blue, white, and red lines on the monitor hanging above her bed space. I don't even remeber if she had a nasal canula at this point. I know that she was not on a respirator at this time, even though the prostaglandin medication she was on affects the respiration rate. I wasn't able to stay long. And even though it seemed unintuitive to leave my newborn behind me, I had to leave. I had to get out of that place.

Friday, October 16, 2009

Fact: 50% of people with Down syndrome are born with a congenital heart defect. Penelope today, at 30 months, has this bump in the middle of her chest from the healing of her sternum. You can see the faint circle shaped scars from her chest tubes.

A close up of Penelope's chest scar. You can really see the scar from the left plural chest tube. She also had a chest tube in the middle after her 2nd surgery (for the total repair). There is that bump again.

Here is Penelope several weeks after her 2nd surgery, the incision is still healing.

This was probably the first bath Penny got when she came home, so about 15 days after her first surgery. She still had the steri-strips over her inscision. You can see the dark maroon circles a few inches under her nipples. These are the wounds from the chest tubes. The week after this, the steri-strips were removed at the cardio office and then a few days after that an infection grew in the inscision wound. I think that added to the appearance of her scar.Yay! A clean slate. A picture of her chest before she was brought under the knife.

Penelope does not have her own pulmonary artery so she will need several surgiers throughout her life. I don't worry too much about her scar since there will be future inscisions to contend with. I hope that Penelope will grow to think of them as her battle scars.

Wednesday, October 14, 2009

Fact: 50% of people with Down syndrome are born with a congenital heart defect. You can read about Part I here. The next time I saw my beautiful girl, it was about 11:30 am. You can see that she was tucked away into the incubator and ready for transport to Connecticut Children's Medical Center (CCMC). Everything was still a blur. I remember the physician from UConn going over a waiver with me. I remember he had this tick and said "hmm" between practically every sentence and that annoyed me. But, he was nice enough and he promised to take good care of her en route to CCMC.

I still hadn't grasped the enormity of the situation. I look back on this picture with distaste. Why was I smiling? What did I possibly have to smile about? Why was I holding my belly like I was still full of child? I guess, I still didn't know what to do with my hands at this point. Only 5 hours ago, there was still a baby in there. Immediately after this picture I had to yell at Nathaniel for playing with the buttons. I didn't know what these buttons did. He might have done some serious damage!

Scott was welcomed to follow the ambulance. Enter friend: Mike, this kid that Scott had met only a few months ago came to visit us immediately after hearing about the news. He brought me the most beautiful flowers and stood by Scott's side the entire day. Later that year, he moved onto another job and Scott and he lost touch. He was a tremendous source of support for Scott during this time and I was glad to have him. Mike was able to drive Scott behind the ambulance. We are so blessed that CCMC was only 20 minutes away so I wasn't worried that my family was too far away. My mother took Nathaniel back to her home and I was left alone to rest.

Proir to my mom leaving, as I sat there wondering what to do with myself, the obstetrician that attended during the beginning of my labor paid me a visit. We had just met earlier that morning, as I had all of my visits with the midwives in the practice. He did not stay with me through to the end of my delivery. Another woman who labored at the same time ended up with an emergency C-section and he moved on to her when my favorite midwife arrived to deliver my daugher. Yet, while I sat and stared, this doctor came back to me. He came in to see how I was doing and to offer any advise, should I seek it. I thought that ws very nice of him.

The plan was that I remain at the hospital a few hours for observation and my midwife would discharge me after dinner. I thought in my head that Scott would find out what was wrong with our daughter, wait for her to get settled in and come back in time for a dinner together . After dinner, we would promplty be freed and then he would take me back to Hartford. I expected all would go according to my plan and I would be reunited with my daughter by 7 pm.

It seemed forever until Scott returned to my side. He couldn't recall the issues that were concerning Penelope's heart or a name of a diagnosis. But he said that the Dr. Cardio said it was pretty common and the outcome was hopeful. I was warned that she was on medication to keep her heart working until they could decide on a proper course of treatment.

I seem to remember that Scott must have ran home to do something, because I was left alone, waiting for those discharge papers to come. Dinner came and went and still no word of when I could be let out. I decided to get myself to the nurses station and get in their faces a bit. My midwife was bound to be out there somewhere. As I head out to the station, I could hear the other mothers with their babies and I started to get emotional, yet I continued on to the desk. I stood and waited for an eternity for someone to pay me some attention. Since no attention came, I walked further past the desk to the great window of the nursery. There were no newborns in there right then, but the hurt in my heart began to deepen because I could not even opt to have my baby there. I headed back to the nurses station and with each step, another tear came down my face. By the time several nurses had time for me, I was weeping. I demanded to be discharged! Why should other mothers that had their babies get to go home before me??!?!

I remember being held up by two nurses, one on each side, to escort me back to my room. On one side was the new midwife on duty. She sat in with me and let me cry. The one thing that anyone said to comfort me in those first days was from her and it sticks with me to this day. She said to me, "You grew her the best way you knew how." Which was to mean, this was in no way my fault. It was such a relief to hear these words even before she went through the specifics. My baby was a wonderful 7 lbs 5 oz. She was born at 39 weeks and 6 days! All the work I did to keep myself healthy during my pregnancy will pay off because I just gave her every advantage I could to make it on the outside. Of course, my work wasn't done. The daunting task of pumping and storing my milk was ahead, but that is another series for another week.

This midwife and I had a discussion. I remember sobbing over the fact that my son was not planned (Scott and I weren't even living together when this miracle was made.) And it was hard in the beginning to get through all that. Now, Scott and I were married, settled, and decidend to bring a new life into this world, and it wasn't anything like we planned. (Geez, I sound like a poster child for "Welcome to Holland") She told me it was ok to feel this way. In a very obvious way she expressed her concern about post partem depression for me and that she wanted me in for a check up at four weeks. She also prescribed some sleeping pills. This prompted me to voice my concerns about my expressed milk. She told me that I can take the first night off from that and my milk would still be there the following day. She ordered me to take that first night off and really get a good night sleep in order to face what lay ahead.

Tuesday, October 13, 2009

+ Penelope used two signs together this weekend for the first time. She wanted more milk after she finished what she had in her cup. Thus she signed "more" and then "milk." I almost cried!!!

+ My mother took Nathaniel to Chucky E Cheese yesterday for lunch and I met up with them with Penny. She and I played skiball together and she was fascinated by the tickets that came shooting out. Much, much later,we were getting ready to head out, when Penny found a stray ticket. She picked it up and walked across the facility. I didnt' know where she was headed but I followed her at a distance. When she got to the three steps to bring her into another section, I continued to hold back. She gingerly walked down the three steps by herself while holding onto the low railing!!! Her mission was to put the ticket back into the skiball machine. lol!

+ Last week Scott left Penelope unattended in the living room while he got himself dressed to go to work. When he came downstairs to a quiet living room, he discovered Penny chomping down on a 7 oz bar of Hershey's chocolate. (I bought it for a cubscout prop.) He said her face was covered in chocolate and she tried with all her might not to give up the contraband to her father. Needless to say she was upset that he stole her prize away. I told Scott that no man should come between a girl and her chocolate. What was he thinking anyway?!?!?!

+ Penny loves dancing to "All the Single Ladies" by Beyonce and will mimick the "Oh, oh, oh, oh,. . .. oh, oh" part very well. She loves to dance and walk backward for this song. lol!

+ I finally busted out all of Nathaniel's Thomas the train stuff that he accumulated over his younger years. Penny loves them! She and Nathaniel built train systems together this weekend.

+ Penny says these words: "Hot", "Dada", "Down", "Duck", "Ah Done", "Fish", "Juice", "No", "Ha" (Hi) and "What's this?" If she hears a "k" sound in any other word, that is how she designates it. As in book, cow, cat, milk. . . . She calls all these things "Kuh!"

Monday, October 12, 2009

Fact: 50% of people with Down syndrome are born with a congenital heart defect.

When we were waiting for Penny to be born, Scott and I thought that we were getting a "normal" and healthy baby. We didn't know if our child was going to be a boy or a girl, we didn't care, as long as he or she was healthy. We didn't elect for blood screening or further genetic testing. We didn't care, as long as he or she was healthy. The two ultrasounds did not indicate anything other than a healthy, normal baby. We didn't know our child carried a secret in her malformed heart. THAT we would have cared about, had we known. . .

Within minutes of her birth we learned that she had a lot of characteristics of Down syndrome. We were left alone with her to bond, but all of our questions about what the diagnosis meant were put on hold until the neonatologist arrived. At 9:00 am, when Penny was about 2 hours old, the nurse must have noticed that Penny was still an unhealthy shade of purple, and my daughter was taken away. The nurse didn't say anything to that affect when this happened. I was told only that Penny need to be looked over. When Nathaniel was born, I insisted all exams were done in my room so that he didn't have to leave my side, but with Penny, I was already worn and consented readily.

I was still in shock over the morning's events, and dead tired I should add since I went into labor around 9pm the night before and labored all through the night to deliver my beautiful girl at 7:00 am. So when the neonatalogist finally showed up some time after they took my daughter, it was a little hard to focus. My recounting of this morning's events, the morning of my daughter's birthday, is to the best of my ability.

Dr. Neo came into my room and introduced himself to Scott and me. I am sure my eyes were swollen from crying over the Down sydnrome diagnosis. But hell, I just had a baby with no epidural, so who cares what I looked like. He jumped right in to tell us that while Penny was being looked over, they realized that she was not maintaining a healthy blood oxygen saturation level (or pulse-ox). He said that they were working on her to keep her alive. That they had to put some lines in her to run some tests. And in my head, I jumped ahead, and thought that the next thing out of his mouth was going to be an unexpected, "We did everything that we could, but she didn't make it." Dr. Neo just looked so solemn, and was so soft, that I thought he was bringing me news of death. But in fact, Dr. Neo, went on to explain that there was something wrong with her heart and she would have to be moved to CCMC for examination.

My mother came in the door at this point with my son, my beautiful four-year old. I breifly wished I could be him, to not know all this chaos that was suddenly in front of me. I could see he had his spiderman pajamas under his T-shirt. A phase he went through so that he could change into Spiderman and be the Hero at a second's notice! My mother took one look at Dr. Neo, ignored the fact that he was right in the middle of talking to me and announced, "Who is this guy anyway?" with a wave of her hand directed at the doctor. I gaped and said, "Mom, he is the neonatalogist and he is talking about the baby." I don't remember if Dr. Neo recapped for my mother's benefit, or if he went on, but I further learned that he called a colleague at UConn's John Dempsy Hospital to come out and faciliate the trasport of my newborn. I later learned that my mother was annoyed that the doctor didn't introduce himself so she felt the need to intervene. I guess this is from all those years of being a nurse. LOL!

When Dr. Neo asked me if I had any questions, I couldn't think clearly enough to think of any. My mother asked him how soon I could be discharged. Where would I have been without her?!? At the time she asked that I thought she was crazy. Uh, hello? I just delivered a baby 3 hours ago! I wanted to forgot all this had happened. I wanted meals brought up to me. I wanted to sleep. I wanted to not have to leave the hospital and deal with whatever was out there in the world. Of course, a few hours after Penny was removed from the hospital, I couldn't wait to get out!

The plan was to move her by noon time and once she was in the hands of the cardiology team at CCMC, we would learn what was wrong with her heart and if she would need surgery.

Sunday, October 11, 2009

I know that I will post to keep you all updated, but Penny will finally have her ENT follow up on Monday with Dr. S at CCMC. I am really exicted and I hope that we will get some practicle solutions to how her speech is progressing. Wish us luck!

Saturday, October 10, 2009

A LONG, COLD SWIM FOR A CAUSEOctober 8, 2009 06:47 PM By Martin Finucane, Globe StaffKaren Gaffney, a tiny woman -- 4 feet 9 inches, 95 pounds – who limps and can't use her left leg at all when she swims, nevertheless churned five miles through the frigid, choppy waters of Boston Harbor today.You can click here to read the rest of this story. There is also a video!

Friday, October 9, 2009

Scott would like me to change the name of this blog to Penny Poopers. This has been her nickname for as long as I can remember, but I don't think it would make a good blog title. lol. As any parent of a child with a disability will agree, WE CAN TAKE NOTHING FOR GRANTED! Bodily functions are no exception. Scott and I were delighted that after a very brief stint (6 days mabybe) with the NG tube, Penelope had the strenght to eat on her own and gain weight like a champ! With the feedings, came the diapers, and boy is my daughter gifted in that area as well! She is coming upon 30 months old now and we still call her our little Penny Poopers.

Her given name is Penelope Adara. I have posted on this before, but I love her name so much and this is my blog so I will brag about it all I want. Penelope was the wife of Odysseus, as in that Greek guy that took ten years to travel from Troy when the Trojan War ended back to his home in Ithaca. The Trojan War itself took ten years as well. So for twenty years, Queen Penelope was without her husband. The story goes that for all that time, she waited faithfully for him to return, and never took on another lover even though there were many, many, men at the door. An alternate meaning to the name Penelope is "the one who weaves." This is more literal because while Penelope was waiting all that time for her husband to return, she would weave every day. Adara has roots in many cultures. In Irish it means "From the ford at the oak tree." In Hebrew it means the exalted one, or one to be praised. I kind of like that meaning too, since so much attention is lavished on her at home. But the meaning we picked was also from the Greek roots, "One who is beautiful, a virgin." So as you can see, we had high expectations for Penelope from the second she was born! Scott and I had been against naming her before she was born. We had a few names to think about and had decided to meet her first before giving her a name.

I always wanted a strong biblical name for my sons, as in Nathaniel Eden, and Greek names, rich in mythology, for my daughters. Kind of weird huh?

I'm curious to know why you all picked the names that you did. Well, except for you, Chloe Sierra, I already know all about how you helped your mommy and daddy pick out your name.

I am going to tag ten wonderful bloggers so I can learn about how their names came to be. I hope you all have time for this!

THE RULES: I want you to post about your child's (or all your children's) name on your blog. Then tag ten other people on your blog as in below. Choosing a name for our child is so important when we were playing that ultimate waiting game, but I am so afraid we loose the meaning as time goes on. I mean, when do we even use a middle name?!?!?!?

Thursday, October 8, 2009

Something I think about nonstop was brought to the foreground on one of my favorite blogs last weekend. You can read an installment of what the Ely family is going through right now by clicking here. I feel terrible that this wonderful family is going through something so stressful right now, but they are all strong and I have no doubt that it will all work out for them. Also, Cammie hit the nail on the head with her post the other day. I love how she felt the need to defend that she wasn't doing her children a huge injustice by the adoption of sweet adorable Addy.

I am often concerned about how Nathaniel processes all that goes on with Penny. On one occasion, I was suprised when he lashed out and said that he is not glad Penny has Down syndrome, that he is not glad Penny had to have heart surgery and almost die. He would rather have no friends and have a sister that didn't have to be sick then to have all the friends that he made through Penny and her diagnosis. I thanked him for his honest reaction, what more could I say? But many a time, Nathaniel told me how much he loves Penny, or how she is the cutest girl ever. Those remarks were completely unsoliciated I should add.

He clearly loves his sister. I know he will be a better person because of her, and that the benefits for him are so numerous I could not possibly post them all. But I need to confess something here. I worry. I worry that he will grow into thinking that he will need to take care of her. Now, I KNOW this will not be the case. If anything, she will end up taking care of him!! HA HA; he is just so careless all the time. I have no doubt that she will be living on her own one day. (or with a spouse. . . ) Strangely, this topic of living with Penny has been brought up by Nathaniel, but Scott and I try not to make it into such a big deal and we let Nathaniel know that he will not have to take care of her.

This is not to say I don't want to mold him into a man that will stick up for her. I mean, I am him mother. I should be able to mold him all I want. For example; Nathaniel and his friend "T" were in the way back seat of the van this weekend when T announced he was hungry and he would, "like some fries please." Nathaniel and T decided to share a large one, and I said fine, as we were smack dab in the middle of lunch and dinner time. When I handed the fries back to T, I asked him to give a couple to Penny, I know she would like some. T stated that he wasn't going to give her any, but yet waved some in her face and started to laugh. Nathaniel laughed along with T. I understand that this has nothing to do with Down syndrome or disability; just kid stuff, believe me, I dissed out my own share of mean stuff to my brothers. However, I kind of yelled at Nathaniel and asked him way he thought this was funny. I asked him to think about if he would like it if we did that to him, and told him that he was going to have to stick up for Penny until she had a voice. Bottom line: DON'T LET YOUR FRIENDS BE MEAN TO YOUR SISTER!

As he grows older, his comments give me a window into his own growth and development. I don't even know really how to answer to the latest thing that has come up a few times (Caveat: this is going to sound insensative, but we are talking about the honesty of a 7 year old) Nathaniel will preface his comment with an observation that most people with Down syndrome look weird, and then concludes with, "Penny doesn't look weird, right? Penny is so cute!" I am curious to know how you all would react to that. I told him that, "Yes people with Down syndrome do have different facial features, but that they look different, not weird." I also mention to him that Penny is still young and as she grows older, that look might become more obvious. Just to prepare him; yet I don't want to leave suggestions. . .

I know that it is natural for him to be curious and I welcome any questions. I would rather him ask me then to go out in the world and unintentionally hurt someone's feelings. My hopes and dreams for him are the same that any other mother would have.: I hope that he grows up into a caring, wonderful young man that will cherish a life-long loving relationship with his sister!

Wednesday, October 7, 2009

Tuesday, October 6, 2009

I have complete faith in NASA and I am sure they know what they are doing. However, does anyone else have images from the remake of THE TIME MACHINE where the moon was in bits and pieces?

You can click on the post title to read an article about this amazing event on Friday. Also, it says that if you have a decent enough telescope, you will be able to see this occur on Friday at 7:30 am.

The Monday morning soup kitchen had just closed when his boss arrived with his next assignment -- vacuum the four second-floor classrooms.

"This is my baby," Kenny E. Thielemier Jr. joked, as he retrieved the upright vacuum cleaner from the closet and headed down the hallway to the elevator.He spent the next 15 minutes moving chairs and managing the vacuum's long cord as he and the appliance moved efficiently from room to room.Before his work day ended nearly six hours later, he swept and mopped floors, carried bags to the trash bin outside and refilled the votive candles in the sanctuary of St. Mary's Catholic Church.

After three years as a part-time St. Mary's custodian, Kenny, 23, of Cordova, knew the routine.After the recent breakup with his long-time girlfriend . . .

YOU CAN READ THE REST OF THE STORY BY CLICKING HERE OR ON THE TITLE. It's sort of long, but a great human interest piece.

Monday, October 5, 2009

New prenatal tests for Down syndrome are soon to be offered to all pregnant women across the United States, yet telling an expectant couple that their child will be born with Down syndrome is a task very few physicians are trained for, claims research published in the American Journal of Medical Genetics. The study, which reviewed decades of surveys and interviews, offers several recommendations for how physicians can best deliver . . .

Friday, October 2, 2009

I admit, sometimes I need some inspiration for blog posts (don't we all). So I thought I would post 21 things about Penny that don't have to do with Down syndrome. This is not an original idea to me, but I like to keep it going.

1. She still has cradle cap and she is 29 months old. When will she get rid of this??2. Penny loves to play "I am going to get you!" A game where she is chased by one of us as she runs and laughs as hard as she can. 3. She loves it when she gets attention from her older brother Nathaniel, but. . .4. Does not like it when he tries to pick her up or hold her, she prefers his attention while she is in mommy or daddy's arms.5. Penny will eat anything if it is in tomato sauce. Including vegetables!6. She likes to lick and kiss things like the wall, the chair, my leg. . .7. She loves music and likes to dance along.8. Penny thinks it is funny when she throws food on the floor. It is her way to defy us or something. Now she tries to be sneaky about it though and waits when we are not looking. 9. She likes going "bye-bye in the car." When she hears that phrase she immediately begins to dig for her purse and puts it on and walks to the door.10. Her feet stink all the time and we have no idea why.11. She likes to share her food and drink by putting things to my mouth or her daddy's mouth - even when the food is soggy with her saliva.12. She can say "dog!" when she sees one in a book or on TV; in person, she loves them!13. Penny has been pretty much sleeping through the night since she was 3 months old (with a few exceptions when she is sick or after her 2ND surgery), but. . .14. She wakes up a 6 am and we cannot get her to shift her schedule even when we put her to bed later and later.15. Penny loves Spongebob Squarepants, who doesn't???16. She hates it when I rub her hair, she is probably afraid I am going to pick at her cradle cap or something! lol.17. Penny likes to play with tea set and then put the cups and such back in her container.18. She LOVES her daddy and he will win every time.19. She has a babysitter that comes over 3 days a week and her grandmother watches Penny 1 day a week.20. Her favorite word is "Dada!" It is not my favorite word when she yells it over and over again at 6:00am.21. Her mommy and daddy think she is the cutest little girl in the world!

Thursday, October 1, 2009

Thanks to Tricia and her muse, Georgia , I have a mission for October. As many of you know, October is Down syndrome awareness month and I am so excited that my 250th post kicks off the month!! Yay!! So check back often. There may be some oldies but goodie posts recycled, but mostly, there will be some new stuff for you to check out.

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Penelope's Story

After waiting the full 40 weeks for this bundle to arrive, I finally went into labor on Memorial day, 2007. At about midnight, I called my midwife's office. I was told to wait. At 2 am my contractions felt on top of each other and I called my midwife's office again. By the time my dear husband, Scott was ready (I had my bag and Nathaniel's bag packed previously) it was 3 am. We arrived at the hospital at 3:30 after dropping Nathaniel off at my mother's house. When I was checked, it was discovered I was already at 6 centimeters! My wish was for a natural delivery so Scott worked hard at rubbing my back and making me comfortable. Oh, yeah, and I worked hard too! At 4:45 am I was ready to push! I thought this part would be quick since my first child took about 30 minutes at this stage. However, this baby decided to take her time. At 6:30 am I was still pushing and my midwife, Mary, arrived just in time for the delivery. As she was gowning up I had to stifle my urge to push for a few moments and then before I knew it, Penelope Adara Ringrose came into this world at 6:51 am! Scott cut the umbilical cord as she laid on my abdomen.

It was a surprise that I had a baby girl, and I am glad I decided not to find out the sex. Another surprise we learned at birth was that Penelope had a little something extra, as in an extra 21st chromosone. I knew the second I saw her that she had Down syndrome, but I thought I could have been wrong. Then at 7:30 am, the acting pediatrician explained to Scott and me that our daughter had a lot of characteristics of Down syndrome. I couldn't believe that on this day that was supposed to be so joyous, I was receiving what I thought at the time was such devastating news. I didn't know much about Down syndrome. Scott and I were left alone to bond with her for a little while and then she was taken away at about 9 am to be checked over. The worst news was yet to come when we learned at 10 am that they suspected cardiac issues. The neonatalogist introduced himself and advised that Penelope could not maintain her blood oxygen saturation on her own and would have to be transfered to another hospital where she would need life-saving surgery. At CCMC (Connecticut Children's Medical Center), we learned that she has tetralogy of Fallot with pulmonary atresia (she is missing the pulmonary artery).

Her first surgery was on June 4, 2007 when she was just 6 days old. The surgeon had hoped to be able to do a full repair at this time, but Penny's anatomy did not enable this to happen. The surgeon was able to put in a Blalock-Taussing (or BT) shunt which kind of gives the blood a detour to the lungs so that it has a chance to be oxygenated. After 20 days total in the hospital, Penelope came home the day before she was 3 weeks old and was able to attend her brother's pre-school graduation.

She was scheduled to have her second surgery on November 27, but during triage at CCMC, it was determined that she had a pseudoanerysm on her right groin and the surgeon did not think it was safe to proceed. The pseudolanerysm resulted from a diagnostic catheter procedure that Penny had on November 14 to see if she was ready for another surgery.

We took our chances that she would be home for Christmas and had her surgery re-scheduled for Monday, December 17 . It was an uneventful surgery except that it was longer than we anticipated. We last saw her at 7:50 am and we did not hear news until a little after 4 pm. The breathing tube was taken out at about 2 pm the next day. Wednesday, the chest tubes were supposed to come out, but a pneumo thorax was found in the chest space and perhaps, leaving the chest tubes in was a better idea. One of the three tubes was removed on Thursday and we were able to begin feeding her from a bottle. Friday, the remaining chest tubes were removed and I was able to breast feed her again! Penny was doing so well she came home the next day and was indeed home in time for Christmas.

We all love her so much and can't imagine life without our beautiful baby girl.